Monday, November 29, 2010

Got Hope?

I get this question often - why bother?  Why bother writing a blog when it doesn't change the fact that I am the wife of a PWP?  Why bother with the hassle of selling clothing and merchandise for a measly few bucks to donate to the APDA when they need millions and millions of dollars?  Why bother donating money at all when they don't have a cure?  Why bother?  What good does it do? 

 The answer is pretty simple.  What other choice do I have?  I watch my husband deteriorate a little more each day, progressing further and further into the depths of a cruel disease.  I can't cure him.  He doesn't want me hovering over him.  There's not much else I can do.  I refuse to sit back and watch this horrible disease take over and do absolutely nothing at all.  If what I do amounts to less than a drop of water in a well that's okay because at least I am actively doing something.  What I do gives me hope.  Hope for a cure?  Well of course I want a cure.  Don't we all?  But my hopes are much more tangible than that.  Each morning I pray that today will be better than the one before, that Keith will have more energy, fewer muscle cramps, more strength.  I hope that I will have a deeper understanding of what PD is doing to Keith.  I hope each day that I will find comfort and friendship in my blogging.  I hope that my fellow PD friends and their families are having good days as well.  I hope that the money I contribute to the APDA will help produce more social networking for PWP, as it is so very important.  I hope to somehow find enough money to incorporate my non-profit in order to help all the children with loved ones affected by PD.  I hope that the words I write in this blog will reach just one more person and that person will perhaps find some comfort, if only for awhile.  I hope that my regular readers, those who have PD or love someone who has it, will continue to find comfort and companionship via this blog. 

My hopes are not exclusive to Keith and a cure yet the implication is that my hope is naive, that I will somehow lose it when catheters, feeding tubes, and wheelchairs come into play.  Two years ago I met a young lady in an online medical community whose husband had PD.  They had two young children but divorced when he became disabled.  She laughed bitterly when I told her of our family and that we were trying to conceive again.  After a long, heated discussion about kids and PD, I told her that for the most part, PD does not scare me, I have hope and I strongly believe that God will not give me anything I can't handle.  "You are stupid then, because what is hope going to do for you when your kids are sick in the middle of the night and your husband can't do a damn thing to help?" she said.  Honestly, I can't say right now what I would do in that situation but I imagine much of my life would be lived as a single mom, doing most, if not all, of the working and child rearing myself. But I had to ask her in return - is a husband in a wheelchair, one who can't help in the middle of the night, disqualified as a family member?  Is he not still your husband and father of your children?  Is he not still a human being, with feelings and thoughts?  She refused to answer me and I have not spoken with her since. 

I married Keith for better or worse, in sickness and in health, but my hope transcends my vows because it is not just my marriage and my husband I hope for.  In my constant thoughts are all PWP and their loved ones, especially their children, grandchildren, nieces and nephews.  My hope is for the confused eight year old who just wants to know that her mom is going to be okay, and for the middle-aged woman who can't sleep, desperately searching the internet in the middle of the night looking for answers.  My hope goes out to the elderly gentlemen tirelessly and tenderly massaging the curled, cramped feet of their wives.  My hope is for all those individuals who take the time to go to monthly PD support groups, conventions and fundraisers.  My hope is much more universal than self-serving.  Naive?  I think not.

So why do I bother blogging, reaching out to others with PD, raising money for the APDA, establishing a non-profit?  I do it because I can.  I do it because it gives me hope.  A lot of people are counting on me for that hope, especially Keith and our children.  Hope keeps me strong, and I am going to need all the strength I can muster for the journey ahead.

So who's with me?  Anyone else Got Hope?

Monday, November 22, 2010

Confessions of a PD Wife, 3

1.  I'm tired of waiting for a cure. I want to take Keith to Lourdes, France and pray for a miracle.
2. Sometimes I want to blog about certain issues that I feel are important to PWP, such as money, sex, and hygiene, but I don't out of respect for Keith's privacy. 
3.  I freak out every time Keith forgets something, because I think dementia is setting in.
4.  I want to take over the lawn care so Keith won't have to worry with it, but I still have not learned how to operate the riding mower.
5.  I am beginning to feel the pangs of sacrifice, though they are Keith's, not mine.
6.  I feel guilty thinking that I don't do enough for Keith.  It's difficult to accept that he doesn't want me to do everything for him.
7.  I have not done a very good job in keeping up with Keith's nightly foot massages.
8.  I am pleasantly surprised that Keith is able and willing to do more with two young girls than he was with just one.
9.  I secretly look for physical signs of PD in Bryan.
10.  I have come to realize that the cognitive issues related to PD are going to be much more difficult to manage than I originally thought.

Friday, November 19, 2010

Parkinson's and Kids

I am always curious about how other couples manage their lives with kids.  Add PD and I'm inclined to become downright nosey.  So I thought I'd share some of the ways we have made a go of PD and kids.  Mind you, this is not a How To guide on raising kids with PD.  I realize that much of what we do may not work for other families, but this is how we roll -

1.  Read, read, read to the kids!  As any PWP knows, PD often causes the voice to become softer and quieter.  Voice exercises are recommended, but who has time for that?  Reading to your kids will allow time for those annoying voice exercises while spending quality time together.  Keith spends a great amount of time each evening reading to the girls, using exaggerated facial expressions and voice inflections.  Singing has the same effect and works well in the car.  Age doesn't matter either - kids of all ages love being read to.  Reading the Bible or school assignments aloud works well with my teenage son, as does learning the lyrics  to and singing along with his favorite songs. 

2. Co-sleep.  Keith and I are natural parents, following our instincts rather than the latest books.  Some call it Attachment Parenting, but we prefer to describe it as Natural Parenting.  Part of our natural lifestyle is co-sleeping, or sleep sharing.  Our girls, ages four and one, sleep in the bed with us and have since birth.  We have queen and full mattresses pushed together to make room for everyone.  This allows for some much-needed physical bonding between Keith and the girls.  Thanks to PD, Keith just isn't able to hold weight for any significant length of time, so holding either one of our girls proves difficult.  Co-sleeping, however, gives him that extra snuggle time that the girls seem to thrive on, making Keith one happy dad.

3.  Home school.  The main reason we now home school is because we need the flexibility to have quality family time when Keith is home and is responding to his medication.  In the old days when my son was in public school our time as a family was limited to evenings, after Keith had put in a good ten hours at work and Joe had spent almost as many at school.  By the time homework and dinner were through any chance of good quality time was buried under tremors, muscle soreness, fatigue, and the endless waiting for the medication to kick in.  Now that we are homeschooling, if Keith is home and active, then we are home and active with him.  If he is out running errands, then we are running errands with him.  If he is off work, then we are on a field trip or at church together or just hanging out at home being a family.  When Keith needs a nap, we take a nap together.  Our quality of life and the quantity of time we have together have greatly increased, all due to homeschooling.

4.  Bicycling.  Biking together is something that we don't actually do yet, but really want to do once we are able to get a couple of tandem bikes.  Studies show that tandem bicycling can drastically reduce PD symptoms.  Our kids love riding their bikes, so what a great way to spend time together doing something the entire family can enjoy!

5.  Purchase PD approved clothes for the little ones.  Fortunately for us, most clothing for babies and toddlers comes in styles that are easy for PWP to use - Velcro shoes, stretchy elastic tops, wide bottom pant legs, zippers instead of buttons.  It's easy to want to purchase those cute grown-up looking clothes, like the zipper and snap blue jeans for a three-month old, or the button down flannel shirt for a two year old, but I always try to remember that if my child can't get them on herself, Keith probably won't be able to either.  We usually go for the elastic, wide legged pants, Velcro or slip on shoes, loose over sized tops.  As a father Keith needs and wants to be able to help with the daily child rearing chores, and simple choices like these can make all the difference. 

When it comes to raising kids with Parkinson's, the bottom line is that you have to be able to think outside the box.  Do whatever it is you need to do in order to spend a large amount of quality time with your family.  PD doesn't have to impair the relationships you have with your children if you are willing to find and seize those opportunities when they are available.  If you can find some way to combine PD exercises and time with the kids, by all means, do it!  Your kids will appreciate the time together while you are fighting the progression of the disease. 


Huge FAMILY AND FRIENDS sale at Life With Shaky, November 20 - 23!
Use discount code Friend10 to save $10 on orders of $50 or more!

Wednesday, November 17, 2010

Get It While You Can!

As usual, our Shaky/I'm With Shaky long sleeve tees are going fast.  Get yours now and help support the American Parkinson Disease Association!

This ADORABLE tote makes a great gift for the holidays!


Monday, November 15, 2010


"Hear the meaning within the word."  William Shakespeare

As children we have all undoubtedly chanted the words, "sticks and stones may break my bones, but words will never hurt me!"  These words are often spoken with much gusto, clenched fists, tears in eyes, facing down the playground bully, but as adults we know how utterly ridiculous this saying is.  Truth is, words can, and often do, hurt.

Words - they can be written, whispered, shouted, spoken, sang and prayed.  They can be truthful, painful, dishonest, empowering, enlightening, crippling, judgemental, angry, happy.  Words can be given and words can be broken.  Words have shaped great nations, crushed families, spawned religions.  We can never underestimate the power words have over us.  Whether you are an articulate orator, a Pulitzer Prize winning poet, or just bumbling along trying to get your point across, know that what you say or write can have consequences that far surpass your expectations, and not always in a positive way.  Words are weapons, and sometimes we find ourselves at war with one another, slinging words back and forth like hand grenades, with explosions that can shake us to the core. 

The past five months have been devastatingly brutal on me, all due to words.  Months ago I had the unfortunate experience of engaging in an exchange of both written and verbal words that uprooted nearly everything I thought I knew.  The opposing side consisted mostly of individuals I care for deeply, though that didn't stop my from slinging my weapons directly at them.  This war of words went on for some time, with many battles being fought behind the scenes.  The dust finally settled with all parties retreating to our own corners to lick our many wounds, but the damage is irreparable.  The words that were used like weapons in this exchange had enough power packed into them to completely destroy several relationships, with a ripple effect that continues even now.  I do not at all regret my words, nor do I wish to take them back.  Though hurtful, my words were true, and I walk away from this war battered, bleeding and bruised, but with head held high, knowing I was honest and that I will somehow learn from this experience. 

I will not back down.  In spite of all the angry words that were said, I will not slink away like a shamed dog with his tail tucked between his legs.  I stand tall and proud, walking away from certain individuals with a finality that can not be undone.  There comes a time in every one's life where you learn that putting your hand near a fire will burn it, so you stop.  You stay away from the fire so you won't get burned.  That is exactly what I have done. 

Parkinson's disease is not going to make our lives easy, and while I don't expect an easy life by any means, I certainly don't want to do anything that will make our lives more difficult.  My new rule for life is this - from here on out, I will surround myself only with people I know to be genuinely supportive, loving, helpful and positive.  If you don't fit that description, then you just don't fit in.  As strong as I like to think I am, I have learned in these past few months that I simply don't have it in me to raise three kids, deal with PD, and manage this huge storm cloud that looms over my head. 

A word on forgiveness:  by no means perfect, I do try to live by Christ's example, especially regarding forgiveness.  I do have forgiveness in my heart for all wrongs done, those of long ago and those more recently.  However, I can not erase my memories, therefore I can not forget.  Also, it my strong personal belief that forgiveness does not equal atonement.  You still have to make amends, make it right.  Too much forgetting paired with forgiving quickly leads to enabling.  That I will not be a part of. 

How does this all relate to PD and my life with Shaky?  Simple - with the negative components removed from my life, from our life together, I can be a much stronger wife and mother.  I am not distracted from what my family needs by the sound of thunder rolling angrily in the distance.  I have removed those storm clouds, walked away from those individuals it did more harm to associate with than not.  It has been a painful break, no doubt, but I am confident that I am doing the right thing for me and my family. 

" . . . but words will never hurt me." 

Here are a few words that have brought me comfort recently:

"To see what is in front of one's nose needs a constant struggle." - George Orwell

"Being unwanted, unloved, uncared for, forgotten by everybody, I think that is a much greater hunger, a much greater poverty than the person who has nothing to eat." 
Mother Teresa

"I know God will not give me anything I can't handle. I just wish that He didn't trust me so much."  Mother Teresa

 Matthew 6:14-15:   For if you forgive men their trespasses, your heavenly Father also will forgive you; but if you do not forgive men their trespasses, neither will your Father forgive your trespasses.

Romans 12:19-21  19 Do not give punishment for wrongs done to you, dear brothers, but give way to the wrath of God; for it is said in the holy Writings, Punishment is mine, I will give reward, says the Lord. 20 But if one who has hate for you is in need of food or of drink, give it to him, for in so doing you will put coals of fire on his head. 21 Do not let evil overcome you, but overcome evil by good.

Sunday, November 7, 2010

Baby or Bust!

Today is our baby girl Cecilia's first birthday.  One year ago today she was plucked, screaming, all eight pounds of her, from my body. 

Keith and I had chosen a home birth this go-round for two reason:  to avoid my having a third cesarean and to try and limit as much of the delivery/hospital stay stress and fatigue as possible for Keith, as it exaggerates his PD symptoms.  As we learned three years earlier during the birth of our first daughter, Rielly-Anne, Keith is extremely uncomfortable staying in the hospital, and the emotional ups and downs of labor and delivery are almost as tough on him as they are on me.  So we chose to go with a home water birth, deciding on Leslie as our midwife for all my prenatal care and birth, and continuing to see Dr. K, the wonderful family doctor I saw for the pregnancy and birth of Rielly-Anne.  Due to my two prior cesareans, I was considered special needs, and was given top priority above all other patients.  Leslie and Dr. K spared nothing to ensure a healthy baby and mom.  Though we were unable to fulfill our dream of delivering little Cecilia at home, we consider her birth to be a wonderful experience with minimal undue stress placed upon Keith. 

At 4 p.m. on November 6, at nearly forty-three weeks along, my water broke.  I called Leslie, our midwife, immediately.  She told me to do whatever prep work I needed to do for labor, take it easy and get plenty of rest.  So I cleaned the house, pulled from the freezer my pre-made wholesome chicken soup and casserole, and made sure the birthing kit was in order and within easy reach.  I had been having very strong contractions since my twentieth week, so we all fully expected labor to move along.  At that point, contractions were mild and sporadic.

Keith arrived home with a few extra supplies we still needed.  We placed a call to my sister telling her to get ready to come over at a moments notice, then made another call to Leslie.  She would be there whenever we were ready; she was fairly sure that true labor would begin in the middle of the night.  She was right - around 2 a.m. contractions were so strong that I could no longer stay in bed.  I got up and just paced back and forth in the bedroom, finally waking Keith around 5. We went downstairs and made it through another hour before calling Leslie.  She arrived at the house around 8 a.m. and was able to confirm that my contractions were becoming stronger and more regular, and also that there was meconium in the amniotic fluid.  I called my sister, who arrived within the hour.  She set about making the soup, taking care of the kids, keeping the house clean, while Keith and I went for a long walk to try and speed up the contractions.  The walk did nothing - by 4 p.m., twenty four hours after my water broke, my labor had completely stopped.  Leslie did all the things midwives do to jump start labor, from giving me organic, labor inducing herbs to belly massage.  Nothing helped.  Finally,  during a conference call with Dr K, we all unanimously agreed that it would be in our best interest to deliver Cecilia via c-section at the hospital.  Before agreeing to that, however, I made sure several criteria of ours would be met.  1.  Keith would accompany me in the operating room as I was prepped for surgery, 2.  Leslie would be allowed into the operating room with Keith during the c-section, 3.  Cecilia would not be parted from either Keith or myself at any time, including immediately after birth, 4.  I would be allowed to have her with me as soon as possible, even while in the recovery room, and 5.  I would use only cloth diapers on her during our hospital stay.  Dr. K agreed to all our wishes, so off to the hospital we went.  My sister stayed at the house with the kids.

I would like to say that everything went smoothly after arriving at the hospital, but that was not the case at all.  We had already pre-registered as a precaution, so that wasn't a problem, but trouble began with the spinal.  The anesthesiologist was unable to place the needle.  She stuck my back five times before getting it into place on the sixth try.  It took longer to administer the spinal than to perform the surgery.  During the c-section something went wrong in getting Cecilia out.  We still aren't quite sure what the problem was, maybe she was simply stuck, but they had to pump my chest repeatedly, so hard my head was bouncing on the table, just to get her out.  She finally made her way into the world at 8:12 p.m., weighing a little over 8 lbs.  Fortunately, there was no meconium in her lungs, and they placed her into Keith's arms.  He carried her down the hall and into the nursery, and along with Leslie, stayed by her side while they warmed her, measured and weighed her.  After about fifteen  minutes they brought her to me in the recovery room, where I was able to nurse her for the first time.

Several days later we returned home to begin a new life with our latest addition, Cecilia Mae.  We struggled with bladder infections, leg quivers, back pain, several rounds of strong antibiotics, and severe food allergies for the first six months.  Rielly-Anne tandem nursed during this time, which I believe helped her transition from being the youngest child to becoming a big sister.  All in all, while this first year had a bit of a rough start, we have all adapted well and continue to learn every day.  Keith has done exceptionally well, stepping up to help with the child rearing duties during times I know he is utterly exhausted.  While the disease is more progressed than when we had Rielly-Anne, Keith is actually able to do more now.  His determination to be a great father amazes me!  Our children are so blessed to have him!

Happy birthday Cecilia Mae!  May you be blessed with many, many more!  Mommy and Daddy love you so much!

Thursday, November 4, 2010

Cast Away

No matter how many times I have seen the movie Cast Away, I always find myself watching the last scene over and over, trying to determine which road Tom Hanks' character takes.  He is standing at a crossroads, looking around, unsure of where to go, not knowing the best road to take.  This indecision comes after finally being rescued from a deserted island he was stranded on for years.  Like the Cast Away character, Chuck Noland, Keith and I have found ourselves standing at a crossroads, unsure which path to take. 

In the four years since Keith's diagnosis, we have each found ourselves feeling as if we were alone, stranded on a deserted island.  We say we are in this together, but in reality we can never fully understand what the other is feeling.  I will never know how he feels as his body deteriorates, slowly becoming more stiff, slow and shaky.  I will never know the heartache and frustration of a slipping memory or of time lost with my children.  On the other hand, Keith will never know what I go through as I watch this disease slowly ravage his body, stealing all those little pieces that make up Keith.  No matter how often we network with others, regardless of all the young-onset PWP we have become friends with, and despite all the PD support groups we have attended, it is still so easy to feel alone, stranded on a remote island named Parkinson.

This past year has been our awakening.  We determined individually and together that we had enough resources to put together a raft, climb aboard, and sail off this lonely island.  We knew the waters would be rough.  We knew it would be dangerous; the chance of drowning in a vast sea of financial insecurity, medicinal side effects, physical disability, memory loss, and frustration was high.  It was risky, no doubt, but we were determined to get off that island, and sink or swim, or even doggy paddle, we were going to get back home. 

As it happened, the trip off the island was the easy part.  I wouldn't exactly call it smooth sailing, but we arrived at our destination in one piece, all parts in working order, a little weary but content.  Now, like Chuck Noland in Cast Away, we find ourselves standing at a crossroads unsure of which road to take.  We have decisions to make about how to proceed with PD that will affect each member of our family.  In the past Keith and I often let our emotions, namely fear, dictate what the outcome of our decisions were.  Not any more.  That's why we've decided on a counselor from here on out.  Not a marriage counselor, but someone who specializes in neurological disorders and the issues they entail.  Most of our interaction with the counselor will be as a couple, though I am sure there will be times when Keith and I will need to speak privately to him/her.  I have been burned out, Keith is frustrated, there is potential for resentments to build on both sides, all of which we want to avoid.  As we stand in the crossroads of PD, we have recognized that we need help in our decision making.  We are no longer stranded on a deserted island, nor do we wish to return to it, so it only makes sense that we would surround ourselves with people we know to be supportive, understanding and helpful, counselors included.  Our hope is that a counselor will help us cast away all those fears and doubts surrounding PD, and help us determine which is the best direction our family needs to turn to.

Let's Get it Done, Folks!

Reminder:  all proceeds from LIFE WITH SHAKY during the months of October thru December are donated to the APDA!

Sales from LIFE WITH SHAKY have been good this fall, so let's keep it going!  We want a nice, fat check to send to the APDA this coming January. 

Bumper stickers and canvas totes make nice holiday gifts, as do our selection of coffee mugs!